My letter to Bill Gates for Cure Thalassemia and the research on BMT

Dear Bill,

I respond to your post about a world-changing idea. I'm no longer a student, but I have a strong passion and I'm deeply studying Thalassemia, the most spread mortal genetic disease in the world.
1.5% of the population – 100 million people – is carrier of thalassemia minor, mainly in Southeast Asia, southern China and Arabian Peninsula. In western countries it has almost disappeared, mainly for prenatal screening and therapeutic abortion. 

Thalassemia carriers are resistant to malaria, and they are concentrated where malaria is endemic.

To survive, a thalassemia major patient must receive blood transfusions every 3 weeks during his life, and he also needs daily drugs and regular iron chelation therapy, to remove the excess of iron caused by the transfusions. At least 15 million blood units are required per year, and it is a relevant cost for the health-care system, and an issue for the children and their families.

In low-income countries, the great majority of children dies within the first year of age, because they can't afford the transfusions, and the ones who survive, they barely reach 15 years of age.

In Italy in the 1980's, Prof. Guido Lucarelli invented the only cure available: Bone Marrow Transplantation (BMT) from compatible donor; he has done more than 50% of all the BMTs in the world. In low risk young patients, the thalassemia free survival rate is 89%, with no more need of blood transfusions, drugs and iron chelation. In Asia the cost of a BMT is about $25,000.

But only 25% of patients have a matching donor, and Dr. Pietro Sodani, who works with Prof. Lucarelli since 10 years, has invented the BMT from mismatched donor (published in 2010 on Blood Journal), using the mother as donor, and giving new hope to the 75% of patients without a matching donor.

Since thalassemia is mainly spread in developing countries and it almost affects poor people, the cost of the cure is too high for most of them.

The changing idea that I propose is to keep the research going, with your creativity and vision, to significantly lower the cost of BMT, doing it at home rather than in an hospital (something similar has been done in Mexico with encouraging results).

Thalassemia is a time bomb, WHO forecasts that it will double within 20 years, and it is also a huge financial burden for developing countries for the cost of blood transfusions and drugs. There is little research going on, because in western countries there is a small number of patients (about 1,000 in the USA).

We need to have BMT accessible to everybody, at a low price, with and without a matching donor.

To know more, you can read the Cure Thalassemia site (Prof. Lucarelli and Dr. Sodani are both involved) and the FAQ on BMT.

Thanks for your valuable time.

With Regards and congrats for your philanthropic work,
Eugenio La Mesa
Co-founder and Chairman
Cure Thalassemia
"Live without Thalassemia major"

P.S.
I work in the software field, as a Microsoft partner, with Francesco Balena and Giuseppe Dimauro, the 2 only Italian Microsoft MSDN Regional Director (both .NET worldwide experts and Microsoft press authors). I won the Microsoft Italy award for the most innovative Internet application. More than 130 Microsoft employees in many countries know me personally, you can check on my LinkedIn profile. 

Comments

[Harman]

Most people may not know who Professor Yunus is but what he did is reamkrable, I found this article fascinating and encouraging. Its a great resource for start up companies Go ladies!!

[Edita]

Hi.I was googling Thalassemia Minor inroimatfon and I came across your site. I was curious about something I know it's probably easier to ask a doctor but I thought maybe you may know the answer.I dont know if it is a dumb question, but- can carriers of thalassemia give blood?

[Therese]

As I sit here with tears in my eyes, I just wanted to say that I am so happy that I statred my day (minus Taylor drinking too much milk first thing this morning and throwing up everywhere..lol) reading this post. What a crazy ride it has been and I am so happy for everyone! Amber yours blog SHOULD be made into a book it has kept people like myself as well as MANY others so informed and a part of this journey so I thank you for that. Oh ya and HALLA-FN-LOOOYA!!!!!!!!!!!!!!!!!!!!!!!!!!

[Karen]

Hi Tyler ~ sorry I haven't checken in for a cpuloe of days ~ Samantha & Remie ( 2 of our granddaughters were here ) ages 6 & 8 can really keep you going and then it's nap time when they leave ~ it's a good tired Tomorrow I am scheduled for giving platelets ~ I am checking in the morning if there is any way that blood can be given here in Middletown in your name. If not Molly Lindsey will be going with me tomorrow. Our church is still praying for recovery. Pastor Herb asked about you today. he wanted to know if you had the BMT & I could smile & say YES !!!! May your CHRISTmas be the BEST !!!!!Peace be with you & yours ~Marlayne

[Sharon]

I understand that felmaes can have a very big and significant contribution to our country's defence. But I personally do not agree that they should be on front line duties. I am not doubting their capability but think about this. What happens if the platoon gets captured POW. Who do you think the enermy will torture for information. I know the felmaes may be strong enough to handle it, but i doubt the fellow male soldiers will. Once the cries of the female being tortured is heard, the hearts of the men will fail

[kredyty]

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